Send Me More Stories About Chronic Pain
“We need to talk about masturbation!” says Alice Jones. Having worked in an online sex store for a year, she’s something of an expert, so I’m all ears.
Alice Jones. Photo: Ashley Church
Alice is passionate about helping people find the right sex products for them, which includes people with chronic illness or disability. I asked if she helped many people who fall into that category, and she replies “Definitely.”
“Often it’s not a disability you’d think of straight away, or an obvious physical one. But people need and want sex aids for all sorts of different reasons. There can be stigma around disability and sex, like maybe people don’t think people with disabilities want or have sex. But I can tell you that disabled people have sex lives just like anyone.”
Alice’s own experience of pain helped give her an insight into what customers might need.
I can tell you that disabled people have sex lives just like anyone.
“I have Ankylosing Spondylitis, or inflammatory arthritis,” she says. “I was diagnosed in my late teens, after years of symptoms.”
“Sometimes it was so bad, I’d just be writhing around on the floor. I can remember my mother taking me the emergency room. They said that maybe I’d dislocated a hip, but they didn’t really know what was wrong. They gave me some crutches and sent me on my way.”
Jones at home, pouring tea. Photo: Ashley Church
It was several years of this before she finally got a diagnosis, and began treatment with the immunosuppressant Humira. Alice injects the drug herself every two weeks. Each shot is worth about US$1400, but it is subsidized in New Zealand, where Jones lives.
“I’m so lucky that it works for me,” she says. “I sometimes feel… not like a fraud, exactly, but when I talk about having arthritis, I have to remind myself how bad the pain once was, because that’s not my reality right now.”
Having the disease under control means Alice has been able to pursue a career in advocacy and more recently in customer service and marketing.
“I worked for a mobile health start-up for a couple of years as a Community Manager, of public social media as well as private patient communities,” she explains. “I then pursued a role in sex toy retail because the industry really intrigued me, and I was also interested in navigating a social media presence for a sex toy company.”
“I love the conversations that work enabled me to have both professionally and in my personal life. I used to be so prone to blushing over anything to do with physical intimacy, and now I’ve been on Facebook Live talking about masturbation and butt plugs for goodness sake.”
Alice Jones overlooking Wellington. Photo: Ashley Church
I used to be so prone to blushing over anything to do with physical intimacy, and now I’ve been on Facebook Live talking about masturbation….
She says that role not only increased her confidence, it gave her the opportunity to explore her interest in sex and disability.
“While I initially joked with friends a bit about how my experience working with patients could transfer over to sexual health, that actually turned out to be very accurate.”
“When people think of sex toys, many of them will immediately picture dildos, or maybe a basic vibrator,” Jones explains. “But there are so many more options. For people with physical disabilities or limitations, there are hands-free vibrators and masturbators, position aids like wedges and harnesses, and products to help those with erectile dysfunction. I’ve helped people who had mental limitations themselves or were caring for someone who does, either to find a suitable vibrator or masturbator to help satisfy themselves, or sometimes to find a life size sex doll –which obviously satisfies a deeper human need for a sense of intimacy than just an orgasm, and something I’m incredibly respectful of and sensitive to. Yes, inflatable dolls are good laugh, and some of their branding is pretty vile – but chatting to a customer about needing an inflatable doll to cuddle up to, it’s a little heartbreaking to hear to be honest, but also kind of wonderful that with online shopping customers can get those products easily and discreetly.”
Jones strokes her cat. Photo: Ashley Church
However, she says there are some conversations that need to take place more publicly, which is part of the reason she’s working on a secret new project, to be launched in the next few weeks.
“I’m excited to be able to write more in depth about sexuality and sex toys, without a pseudonym or a commercial interest.”
Sexual health just isn’t talked about enough… And disability or illness can add another layer to that.
“Sexual health just isn’t talked about enough. It’s ridiculous to have any kind of stigma around it, because most people are doing it, or wanting to, whether it’s alone or with their partner or partners. And disability or illness can add another layer to that. Fatigue and pain can impact on what you can do or feel like doing. If your body changes because of your disability, that might affect you. Medication is its own minefield: it can change your body, your libido, your confidence.”
Alice says while she’s become more open about sexuality, she’s found it both fascinating and disheartening how reluctant we are as a society to talk about it.
“I’ve dealt with so many customers who were understandably nervous to discuss their sexual needs and seek advice, especially those who had disabilities to consider… and if it’s that difficult to approach those who are talking about sex openly all day long, just imagine how much more challenging people find it to broach those topics in a clinical setting, with their GP or specialist.”
This is not the first time Alice has acted in what can be seen as an advocacy role. At twenty, she co-founded the nationwide group Super Young Arthritics, which focused on supporting young people with arthritis and raising awareness about the disease.
“I think things have changed since then,” she says, “but as a young person with arthritis – there wasn’t much for us, in terms of information or support. People still have this idea of it as an old person’s disease.”
In fact, arthritis is the single greatest disability in New Zealand. More than half a million people are affected by arthritis during their lifetime, and at one any one time, 1000 children and young people under the age of twenty are affected.
Medication is its own minefield: it can change your body, your libido, your confidence.
Alice says her symptoms were at their worst during the time when most people are exploring their sexuality, but while that presented some challenges, she doesn’t feel like it had as much of a negative impact as it could have.
“I guess maybe there were specific things I couldn’t do because of joint pain and stiffness, but fortunately I don’t think it ever prevented me from having a good sex life, and orgasms are pretty wicked painkillers!” she laughs.
“I vaguely recall there being some euphemistic reference to sex amongst the pages of pain scale questions I filled in before specialist appointments, but I definitely think that even if my joint pain had been having a big negative impact on my sex life it’s not something I would have thought to discuss in a clinical setting then,” Jones continues. “I wouldn’t have seen it as a relevant issue that needed to be considered in my treatment. Being able to work and sleep were the only things I considered priorities.”
She’s grateful that her condition is under control now, but being conscious of the fact she has Ankylosing Spondylitis “for life,” and that it could flare up at any time, makes Alice grateful for what she gets to do now, and that she can use her past experiences to inform helping others.
“I don’t I tell people about it all the time,” she says. “But I do have that insight, and that awareness. And that can be really useful.”
